Survey Shows Most Americans Unaware of One of the World’s Most Mysterious and Devastating Diseases

WASHINGTON, D.C. — Seventy-two percent of Americans between the ages of 18 and 34 have either not heard about lupus at all or know little or nothing about the disease beyond the name, according to a new, independent survey released today by the Lupus Foundation of America. The statistic is particularly disturbing because this is the age group at the greatest risk for the disease.

To fight this lack of awareness and focus more attention on the disease that affects 1.5 million Americans, the Foundation is taking a newly energized approach to show lupus for what it really is—the cruel mystery.

The survey results were released today at an event at the National Press Club, where lupus experts and people living with lupus, including three-time Olympic gold medal winner Shannon Boxx, who was diagnosed with lupus in 2007, spoke about the mysteries and devastating impact of the disease. Foundation officials also unveiled a multi-city education initiative to fight the lack of awareness about lupus and engage the public, healthcare providers, and those with the disease to join the fight to end lupus.

The Help Us Solve the Cruel Mystery™ National Tour will feature a 45-foot bus with eight interactive exhibits and displays where visitors can experience what it is like to face lupus, reinforcing the urgent need to end the disease’s brutal impact. Visitors also can demonstrate support for people with lupus by signing a petition that asks Congress to provide more money for lupus research and education services. The tour name reflects the Foundation’s new identity campaign developed to promote a deeper understanding of the mysterious, unpredictable, and devastating ways that lupus can impact any organ of the body, and its programs and services to support people affected by the disease.

“One of the greatest mysteries of lupus is that it affects different people in different ways—no two cases are exactly alike,” said Dr. Susan Manzi, Co-Director of the Lupus Center of Excellence, in Pittsburgh, Pa., who also serves as Chair of the Department of Medicine of West Penn Allegheny Health System and as a member of the Lupus Foundation of America Medical-Scientific Advisory Council. “This disparity makes lupus one of the most difficult diseases for physicians to diagnose, treat, and manage.”

“For me, life with lupus means never knowing what each day will bring,” said Aiden Gallagher, a college freshman at Dutchess Community College in Poughkeepsie, N.Y., who has lived with lupus since she was 11. “Seizures, serious kidney disease, brain and nervous system involvement, and surgery on my bones are just a few of the complications I have experienced, which have put me in the hospital more than 100 times over the course of my disease.”

“There is widespread confusion surrounding lupus, and the American public does not understand the serious nature of the disease,” said Sandra C. Raymond, President and CEO of the Lupus Foundation of America. “We think it is extremely important to come out and call lupus what it is, using the language most people with lupus, physicians, and other stakeholders want us to use—baffling, physically challenging, complex, and hard to define. In short, the cruel mystery.”

The multi-city tour will include a patient education program where people with lupus and their families can learn from and interact with world-renowned lupus experts. In addition, healthcare providers can attend continuing medical education (CME) events on the biology of lupus, organ system effects, diagnosis, and treatment. The bus tour will begin in San Francisco and travel to cities including Los Angeles, Denver, Dallas, Raleigh, Richmond, Cincinnati, Detroit, Boston, and New York City.